Category: Disability

We’re 12 October 2018 which means it’s world arthritis day! According to this day I decided to share how this chronic illness affects my everyday life. I feel like this disease often gets associated to elderly people and people often don’t believe how hard it actually is to live with it.

First of all I’d like to say that I’m 23 years old now, I only got the diagnosis of RA last year but it’s been going on since I was about 18 year old, so I’d like to give some background information. I started to notice that my joints were quite painful, mostly my back and knees. I used to be quite small as a child and all of a sudden I grew quite quickly so my doctor always said that the pains were just normal growing pains as my body grew too fast at once. I didn’t think much of it and just carried on life like I normally did.

I used to do all kind of sports from gymnastics to swimming. I never really did those sports for a long time except for horse riding. I started this sport when I was about 12 years old I think, absolutely loved it, I was actually looking to get into the professional side of it as the ultimate goal was to reach the Olympics. I had to stop this dream due to the pain I had during and after riding at the age of 18. At that age I also started nursing school, first year everything went well but during my second year my right knee started to swell up and be very painful, I thought it was just because of the internships I was doing, the long hours standing up. I didn’t think much of it until I once knocked my knee against a patients bed and I couldn’t bare the pain, the nurse I was working with told me I really need to see my GP as it might be a nasty infection (I recently had a tattoo done on that place so there’s always a risk).

I went to my GP and he basically immediately referred me to a rheumatologist. So I went and took several tests, I must say I never thought it would be possible to do so many blood tests, MRI’s and x-rays in like a month time. The tests came back and my specialist was sure I had some type of arthritis but he didn’t had a clue of which one yet. I started medications and I was pretty hopeful everything would go back to normal soon. But my body did not respond on any of the medications I was given (we still haven’t found the right ones). In February 2017, I was 21, my body developed another chronic illness, CIDP, due to a medication I was taking for my RA. CIDP is a neurological disorder which targets my body’s nerves, in my case it causes numbness, pain and less strength in my legs, arms and hands. I received plasmapheresis for several months, twice a week.

I’m 23 now and I’m worse than ever.

It’s not only my right knee anymore that’s affected by my RA but also my left knee, both elbows, both wrists, my right thumb (I cannot hold a pen anymore for example), my jaw, my right hip (I actually got the news a few days ago that I’m in need of a new hip, I remind you that I’m only 23) and both ankles. I walk with a cane and going to places, like shopping or going out with friends, isn’t possible anymore as walking and standing up for longer than one minute makes me have an unbearable pain. So for now online shopping is like a lifesaver haha.

I need help for all sorts of things but the thing I struggle with the most is the fact that I need help to get washed and dressed (I also use a bath seat, they’re amazing). It’s humiliating to be honest. I can imagine that it’s already a hard thing to accept when you’re like 80 but being 23 and not being able to do your personal hygiene is very very embarrassing. It’s something I struggle with the most mentally and I still haven’t really accepted it. But I did found a way to make the whole progress of being washed and dressed by someone else less ‘painful’. The music of Twenty One Pilots seem to ease my mind during the whole thing, I can’t really explain how but I did try it with other music and it did not have the same effect. I hope that someday I can thank them even though I don’t know how, it’s not like I could tell them “Hey, your music eases my mind while I have to be washed/cared by my nurse”. It’d freak them out haha.

Another thing I’m kinda embarrassed is to need/use is a raised toilet seat, we have 2 toilets in the house and I decided to only put the raised seat upstairs so that way if guests are around they don’t see the raised seat. A bit silly, I know, as I could use those on both but I still have a hard time accepting needing those sort of things. Due to my RA I also recently got the diagnosis of chronic fatigue syndrome, I won’t go into that as I really want to focus on RA but I wanted to mention it as it’s very common that most people don’t get diagnosed with just RA but also with other chronic illnesses linked to RA.

The constant pain I’m in makes it very hard to handle everyday life. Getting out of bed is often a big task on it’s own. Getting downstairs involves being very careful to not trip and fall. Getting coffee means hoping there’s some milk already open as I can’t open them myself. Getting in the sofa means making sure I have everything near me first so I don’t have to get up again and risk falling while being alone whist my mum is at work. Getting showered means being washed and dressed by someone else. Having dinner means often that my mum needs to cut my meat into pieces as I can’t do it. Going outside means relying on someone else as I can’t drive at the moment.

In 2015, while being in nursing school, I started to get the first symptoms of RA.

I had a left swollen knee which was painful to walk on, I thought it was because of the many hours standing up during my internships and it would pass with time.

A few months passed by but the swelling and pain in that knee only got worse.

So I decided to go to my GP, he referred me to a rheumatologist.

After many blood tests, MRI’s and other tests my rheumatologist agreed that I have RA.

At that time I was pretty confident that it was just a case of starting medications and I’ll be able to just continue with my life as I was before..

But things turned out very differently.

In 2016 my symptoms got worse, not only my left knee was swollen but also my right thumb which made it harder for me to write.

Internships were harder and harder for me to do because of the pain, I had a lot of times that I just hid myself in the toilets as I just broke down because of the pain.

It came to the point that I couldn’t finish my last internship, luckily the school I was at was very understanding and let me to graduate and fulfill my ambitions of becoming a nurse.

In the summer of 2016 I got surgery on my left knee as an attempt to reduce the swelling, which unfortunately didn’t help.

We’re 3 years down the line since my diagnosis and we still haven’t found any medications that help me with my RA.

Also to make things worse, at the end of 2016 beginning of 2017 I also got diagnosed with CIDP (Chronic inflammatory demyelinating polyneuropathy)

which causes me to have less strength in my legs, hands and arms, it also causes numbness and loss of my reflexes.

Because of my RA and CIDP my health went downhill quite quickly in 2017 till now. I currently walk with a walking stick but it came to the point that I unfortunately need a wheelchair.

I can’t walk or stand on my legs long anymore without having a lot of pain and my knees really struggle with keeping me upright.

I also need help when I shower/wash my hair/get dressed. I sometimes even need help to get out of bed.
Most of my joints (both knees, both wrists, right thumb, both elbows, both ankles and hips) are always swollen and painful, which makes it very hard and painful to be mobile. My organs, such as my heart, and muscles are slowly but surely getting problems too.

I have luck with the fact the government have agreed with giving me a custom wheelchair for free, which I’m obviously very thankful for.

But it’s impossible for me to push myself because of my lack of strength (due to my CIDP) and because of the swollen and very painful joints in my hands and elbows.

Therefor I need special electric wheels (Wheeldrive, see picture) to put on my manual wheelchair so I don’t need to push myself.

Long story short, I cannot use the wheelchair without those special wheels..

Those wheels cost normally over €6000 but the government pays a part of it which is great but I still need to pay some of it myself, which is why I’m doing this.

Being able to have those wheels means I’ll also be able to study again (as nursing isn’t something I’ll be able to do anymore) and look for a job that suits me.

It’ll also mean I’ll be able to go more outside again and see my friends, go to the zoo, go to the shops… Things which I have struggled with for months as walking is just too painful.

it’ll basically mean I’ll be able to have some of my freedom back.

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